Question & Dancer: OCD & Family, Romanticizing Mental Illness, and What to Expect in OCD Remission

question-and-dancerI’m an artist not an expert, one who is learning to embrace questions more than answers.

These are some questions I got last month. Ask yours here.

How do you explain OCD to your family? Especially when you’re not sure whether or not your family has mental illness?

First I’ll say that I think that it’s up to each individual to determine whether or not they’d like to share– and how much. With OCD, many of our obsessions are taboo, which– quite honestly– makes the idea of sharing seem terrifying. I hear from a lot of younger sufferers too, who are under their parents’ roof and parents’ health insurance, which complicates treatment.

I heard from so many teens with HOCD that I wrote this post in 2015 so that they could share it with their parents and not have to say a word themselves. I’d be happy to write a general OCD one, if you guys think that would help.

As for me? I gave my mother a copy of Kissing Doorknobs by Terry Spencer Hesser– a copy in which I had underlined all the quotes that resonated with me. At that time, it was the best I could do to explain what I was experiencing. These days, I’m more articulate– but I have lived for longer with my diagnosis, been through treatment, and come out shame-free. I know many aren’t there yet.

Is HOCD a physical illness as well as mental?

Briefly, yes.

Hi, does OCD make you want to confess something even when it’s not true?

I have Pure-O, and confession was one of my biggest compulsions. I would confess to bad thoughts, things I thought might be sinful, anything that my OCD took and throttled me with. And yes, sometimes those were things that I didn’t even need to apologize for. But the anxiety would grow so intense that the only “release” was to confess. I got a lot of weird looks in those days.

Here is the thing: if you (like most people with OCD) can understand when you’re thinking or doing something off (you know it is not quite logical, even if you have created a weird sort of logic for it; or if you know it is something that the general public would not care about or confess), then don’t. This is fighting back against your OCD with the tools of exposure therapy. It will, for a time, feel like the anxiety will go so high that things will never be okay again, but that is the lie of OCD. The anxiety will diminish, and you will be okay. Stay in the cold pool long enough to adjust, and eventually the water will not feel cold anymore. But this can only happen by staying in the pool.

I read your post about OCD and creativity. Could those two ideas be linked to intelligence?

Great question. You’re likely referring either to this post or to this one.

Research has shown that high IQ is correlated with anxiety. Anecdotally, many people with OCD are also very creative (did you know popular YA authors John Green and Maggie Stiefvater both have OCD, along with unpopular YA author Jackie Lea Sommers? ;-))

HOWEVER, OCD is not something to be embraced. I know that in the past, I thought if I didn’t have OCD, I wouldn’t be as funny or quirky or creative. John Green, in a talk I once heard, shared that he also had that false understanding for a time– that his OCD was what fueled his creativity. He’s written about that here. Please read it; it’s very good.

The point is that– whether or not there is a link between OCD (bad, awful thing) and creativity and/or intelligence (good, excellent things)– we need to be careful not to romanticize mental illness or to give props to it. If you are smart or intelligent, kudos go to you, not to the disorder.

I treated my OCD in 2008, and now I am more creative, more me, more productive, more intelligent. So it wasn’t OCD that made me what I am at all. In fact, OCD was holding me back. Don’t romanticize mental illness. Treat it.

Hi…this is a weird question, but I’m worried ERP won’t work on one of my particular obsessions. I made some account on a website and now feel the compulsive urge to delete it because maybe I don’t like the username and it’s “contaminated.” But at the same time, I don’t want to delete it because I’ve invested some time into building it up (it’s a writing website, more articles you write higher rating you get)…but I’m worried if I don’t delete it, this anxious feeling will never go away!

That is a lie: the anxious feeling will go away … and possibly sooner than you’d think. ERP works great for situations such as these. You can do this.

With OCD, can it be possible that you don’t know the difference between what thoughts are even yours anymore or the OCD’s?

That is possible– and sometimes happens to me when I’m in sort of a manic state.

Most often, I can tell the difference. I know that one thing feels a bit ridiculous. And this is a hallmark of OCD (except in very young children): that people with OCD usually have some understanding that what they are obsessing about is not something that most people would worry over.

My ERP therapist taught me to look at these things through the lens of the “community standard.” That is, how would most people react in this situation? Because if my reaction is way off from that, then for ERP, I need to go with the community standard instead, even if it’s scary or hard.

When I am in the throes of an obsession, I sometimes can’t tell what the community standard is. I have literally sat down my friends or coworkers, explained the situation, asked for the standard response, and then BELIEVED IT and DONE IT, no matter how difficult. Because this too is part of exposure therapy, the very best treatment for OCD. (If you’re not familiar, you can read up on ERP at http://www.jackieleasommers.com/OCD.)

I have thoughts about death and how we will all disappear after this…and if life is meaningless or not I’m diagnosed with OCD and i had HOCD , harm ocd , etc… Is that a new theme or is that something new ?

This sounds like an existential theme of your diagnosed OCD. This was a huge part of my own experience, and what my first novel is about! See http://www.jackieleasommers.com/truest.

With your OCD, do you ever feel that you’re wearing a mask everyday?

Not anymore– but before, YES YES YES.

I used to talk about this with high school students in the midwest, and I would read this poem aloud.

I’ve been struggling with ‘Pure-O OCD’ for a while and because my compulsions are almost exclusively mental, I’m afraid I’ve been automatically engaging the negative sensations associated with the thoughts I get. Although I know the thoughts are very irrational, I can’t seem to be mindful enough to sit with the negative emotions and not have them affect my mood. Little by little, over the years the thoughts are triggered by almost any activity I’m involved in and I feel like I’m running around in a circle and not making much progress. Activities and events that are supposed to be enjoyable are viewed by my brain as hurdles and obstacles to overcome. As far as CBT goes, I tried following the 4-step method by Dr. Schwarz which help a little to put me in the right mind set but I haven’t had much sustainable success. Being a Christian, I feel like I’m wasting time giving in to the negative pull the thoughts I get have on my behavior, which in turn, rob me of valuable time spent acting as a true follower of Christ. Based on your experience with Pure O, what would you say is the best CBT method to effectively manage it? Is it ERP or mindfulness, or a combination of both? Thank you

While I know a lot of OCD sufferers who practice mindfulness, the #1 treatment recommended by all OCD experts is ERP (exposure and response prevention) therapy. Your story sounds so, so, so, so similar to my own. I went around in circles for 20 years before doing ERP. After just 12 weeks of ERP, I have had tremendous freedom, peace, joy, and spiritual growth for the last 9 years. You can do this!

I hope you’ll take the time to read my post about Post-ERP Spiritual Growth. It really summarizes all the healthy changes that came about in my life and faith after treatment. Blessings!

I feel like I might have OCD..maybe ROCD for a while, but that cleared up so I’m unsure about that. I’m 13 years old (a girl) and I think I have been dealing with hocd since the end of 6th grade (11 years old). I have been with my boyfriend for 7, almost 8 months. This hocd is getting better…I think. I always feel like there is another person in my mind telling me that I’m gay. I sometimes don’t feel as disgusted as I usually do when that happens, and that scares me even more. I wish I could tell my boyfriend, but I feel like he would think I actually am gay. Also, Recently i have the tendency to look at girls’ butts and boobs! Is this normal? Is it not hocd? It bugs me so much, and I feel so disgusted and guilty. I’ve never wanted to kiss, date, or do anything sexual with a girl. Whenever I see a girl, I think “she’s pretty.” And then I start questioning myself. And I think “is she attractive? Do u want to do stuff with her?” And soon it calms down. But it comes back as quickly as it goes. It’s so scary. I want it to go away for good. I told my dad two years ago when it wasn’t as bad. So he doesn’t know the full story. My mom knows and I told her recently. She doesn’t understand how horrible it is. I don’t want to tel her everything I question and feel because I don’t want her thinking that I am gay. Even though she would be fine with it. But I’m not. I want that therapy. I’m on medication for anxiety, but it’s not helping too much. This hocd causes me anxiety and depression. I went through a really bad period of this about a month ago, for two weeks. I wanted to die, and I’d use my nails to scratch myself. I don’t know what to do. I wish I could tell my parents, friends and boyfriend, but I don’t know what they would think. Please help me. I want an OCD free life.

Oh sweetheart, please read my answer to the first question above. I think it will help you. Consider sharing this post with your parents. ERP works; it truly does. You are thirteen and have so many exciting things ahead of you– your whole life! The earlier you treat OCD, the sooner you can get to enjoying things again. If you really feel like you can’t tell your parents about your OCD, and if you’re driven, you can treat it yourself at home, using one of the books listed in this post. Don’t give up, honey. Gosh, I can remember being in the same hell that you’ve been living in when I was your age. It feels so horrible and hopeless and exhausting. But you won’t be there forever. ERP will help. Hang in there.

Want to know more about consequences of years of compulsive behavior and thinking haunting life…even after ocd is gone

This is a really good question, one I’ve not been asked much before.

First things first, OCD is very rarely ever gone. Except in the case of a miracle, OCD is a chronic disorder that a sufferer has until death. That said, ERP therapy can subdue it to the point where it feels gone, which is just about as good as the real thing, right?

I’ve written a pretty detailed post about remission and relapses here. While I think it will answer an aspect of your question, the spirit of your question seems to be: what lingers?

For me, not much. (Thank God!) OCD has little to do with my daily life anymore. That said, there are seasons (and in fact, I’m in one right now) when it is like opening a rarely used door in my life only to find that OCD has actually been chilling out there for years, just waiting for you to reenter that old room. (For me, it’s dating. I haven’t dated in a while, and so I haven’t had to deal with the whole ROCD thing. It’s okay. I’m battling it, and I have all the confidence in the world that I can subdue it because I’ve done it successfully now for nine years.) For me, the 12 weeks of ERP therapy I underwent had a far longer-lasting influence on my thought patterns than the 20 years of obsessions and compulsions that came before. It is that powerful. Learn more about ERP at http://www.jackieleasommers.com/OCD.

Thanks for all the questions, folks! If you have questions for me about anything (but especially faith, creativity, and mental illness), add yours here.

As I said, I’m an artist not an expert. I will leave you with these, some of my favorite questions in one of my favorite poems, “Questions about Angels.” Click here to hear Billy Collins himself read it. (P.S. It starts with questions, ends with a dancer.)

 

Sweet Freedom

freedom in redAlison Dotson, president of OCD Twin Cities, and I were emailing recently about how sometimes we feel as if we say the same thing post after post, article after article, especially since they usually involve our own stories with OCD, and history doesn’t change.

But I reminded her that even if we’ve heard our stories over and over, someone else might be hearing it for the first time. Not to mention that sometimes those of us with OCD need to hear the truth multiple times before it is finally able to sink into our heads and hearts.

So here it is again:

I was in bondage to obsessive-compulsive disorder for twenty hellish years. I was plagued by ugly, intrusive thoughts that caused me intense anxiety and even terror. Many days I felt completely out of control of my own thoughts, and I hated the ugliness that polluted my mind. I was sad, lonely, depressed, lost, engaged in an ongoing war where the battlefield was my own brain.

And then an amazing psychiatrist named Dr. Suck Won Kim gave me not only a prescription but also the phone number to a cognitive-behavioral therapist in the area, along with the warning that ERP therapy “will be hell” and the encouragement that I had to do it anyway.

And I did. For twelve grueling weeks, I practiced the exposure therapy assignments set out by Dr. Christopher Donahue, and after twelve weeks of hell … I was free. Free for the first time since I was seven years old. I could barely even remember what freedom felt like, what it felt like to be master of my own thoughts, to rule over my OCD instead of having it rule me, and so it was actually a little scary at first.

But let me tell you: you get used to freedom, joy, and light pretty darn fast.

The last five years have been magnificent.

Please, please ask me questions if you have them.

For (lots!) more about OCD and ERP, go to jackieleasommers.com/OCD

Image credit: Jesus Solana

An Uncertain Framework

I used to get thrown by anything I couldn’t know FOR SURE.

Is real life real life, or am I just dreaming?

Am I going to heaven?

Are my friends really my friends?

What do people really think of me?

Are people even really people?

I mean, completely thrown.  I had no framework for dealing with uncertainty.  And the truth is that a person just cannot live that way.  It’s not how life works.

Now that ERP has re-wired my mind, I am finally able to say, “I’m just going to have to accept that I can’t know” and carry on with life.  I never thought I’d be able to approach such huge things with that kind of statement.  Never. If you’re reading this and think that that is an impossibility for you, please know that I once thought the same.

uncertain

Related posts:
Narnia and Uncertainty
Uncertainty is the Key
Uncertainty
Interview with a Former HOCD Sufferer
No Antidote
Life is Risky Business

There’s so much more to OCD than hand-washing …

washing handsIf you use Google Images and search “OCD,” what you end up with is a lot of photos of lame OCD jokes and of soapy hands.  It reminds me just how little the world really knows and understands obsessive-compulsive disorder.  Heck, before my own diagnosis, I myself pretty much thought of it as “that disease where you wash your hands a lot or have to tap the doorknob over and over.”  Insightful, Jackie.

While it’s true that contamination obsessions are a prevalent theme among OCD sufferers (I read somewhere that about 60% of OCD cases deal in this arena), that’s not the only obsessive theme.*  And even hand-washing is often misunderstood.  People just don’t understand that there are persistent, unwanted, intrusive thoughts that are driving the hand-washing or other compulsions.  Compulsions are a response to what I personally think is the darker half of the disorder: the obsessions.

* Other common obsessive-compulsive themes include a need for order or symmetry, hoarding, checking, sexual obsessions (including HOCD, in which a straight person obsesses about being gay, or a gay person obsesses about being straight), religion/morality/scrupulosity (my OCD world!), and aggressive thoughts around harming others or one’s self.  OCD is probably bigger, wider, and scarier than most people ever imagined.

 

OCD stereotypes and Pure-O

Just like any other group, obsessive-compulsives have their own stereotype, which is quite often perpetuated by media.  When most people hear “OCD,” they think of a neat-freak.  The truth of the matter is that, for some, washing and ordering are just symptoms of the problem.  Oh, and about 2/3rds of OCs are hoarders, so … yeah, that neat-freak stereotype falls a little flat.

monk

Personally, I identify as a pure obsessional (in our community we call it “pure-o”), which is actually a misnomer, because we pure-o’s still have compulsions.  My most common obsessions were about sin and hell, and then my primary compulsions were seeking reassurance* and internal repetitive prayer.**

* This usually centered around whether or not I was hellbound or whether or not something was “okay” and not sinful.  With some people, it would be an overt, “Do you think this was wrong?” or “Do you think I’m going to hell?” but with others, I would be more passive about it.  For example, at work, I would say something like, “I am terrible at this,” and then wait for someone to say, “No, Jackie, you’re not!  You’re great at your job!”  Both are forms of seeking reassurance, and it is a real compulsion.  I know because if I would try to keep myself from doing it, my heart would flood with terror.

** This was prompted by certain words and sounds– for me, usually curse words, words that sounded like curse words, and the sound of the letter f– and would include repeating the phrase “Father God, I love You; Father God, I love You” over and over in my head.  This was my way to combat the direction I knew my mind would go when I heard those sounds, which would be to curse at the Holy Spirit, what I believed to be unforgivable.

If you weren’t a close friend of mine, chances are you probably wouldn’t even notice my compulsions (although a roommate did notice what appeared to be a facial tic– when the repetitive prayer was cycling through my mind and someone was having a conversation with me, it would be so hard to keep both going that I would shake my head– just a little bit, like an Etch-a-Sketch– to “clear away” that repetitive prayer, et al, and focus back on what my friend was saying).  So there’s that.

And I am not a neat-freak.  Not by a long-shot.  Ask anyone who has ever lived with me, and they will tell you that I am a slob.  My friend Tracy would say I’m a “piggy”!

I know obsessive-compulsives who are washers, checkers, orderers, hoarders, but actually, most of those I talk to are pure-o.  You live with us, work with us, are friends with us– and you don’t even know it because we don’t fit the stereotype.  There is this joke that goes “I have CDO.  It’s obsessive-compulsive disorder, but the letters are in alphabetical order AS THEY SHOULD BE,” and I just find it so annoying because it seems to belittle OCD so much.  Even for those who are orderers and who would be upset by something like that.  People just don’t understand that there is a drive– a terror– so much fear and this feeling of disgust and wrongness if we don’t perform our compulsions.

It’s so much more than being organized or neat, even for those who are organized and neat.

What are some stereotypes you or others have of OCD?  I’d love to share the truth!

Oh, and don’t even get me started on the non-obsessive-compulsive people (those who are just straight-up clean or quirky) who then label themselves as “OCD” … grrrrrrrrrrrrrrrrrrrrr.  Yeah, maybe if it stood for “obnoxious chump disorder.”  😉

 

 

 

more thoughts on solipsism syndrome

Solipsism syndrome is a psychological state wherein a person feels that the world is not “real.”  It is only marginally related to the philosophical idea of solipsism (only knowing that you yourself exist and having no way to know with certainty that anyone else does).

All of this intrigues me because I myself went through a period of time where I was very detached from real life.  In fact, for a time, I honestly wondered if people were really demons who wanted to somehow trick me into hell.  There was a part of me that knew it was completely ludicrous.  But I couldn’t let go of the idea that I was somehow stuck in my own personal Truman Show hell.  I was withdrawn from everyone, living in fear and distrust, sadness and loneliness.

In my completely unprofessional and completely personal opinion, solipsism syndrome has a large connection to Pure O OCD.  I am writing a story about a young lady with solipsism syndrome, and to me, it just SCREAMS, “Pure O!” over and over.

To me, the key to putting both OCD and solipsism syndrome under one’s foot is learning to embrace uncertainty. 

It sounds so simple, but it’s incredibly hard to do.  Cognitive-behavioral therapy was the tool in my life that helped me to do this.

slavery and freedom

Last Thursday and Friday, I attended the Global Leadership Summit through a satellite site, and it was incredible.  This was my second year attending, and both last year and this year were phenomenal.  Essentially, the Willow Creek Association pulls together a knock-out faculty of world-class leaders to speak; it’s like being smacked upside the head (in incredible ways) each hour.

On Friday, Pranitha Timothy of International Justice Mission spoke about human trafficking and about her work with IJM to rescue many from slavery.  It stirred my blood.  It always does, to hear stories about slavery and freedom.  I want my life to matter, want to do something important for the Kingdom.  I could almost picture myself going into dangerous situations to pull children out of slavery and get them safely back into school.

On Saturday, I met with a college student whom I have known for about a year and a half, a young man who is living in his own personal OCD hell and is ready to break out of it by pursuing cognitive-behavioral therapy.  We sat together, discussing OCD and how hard it was and how no one understands– but also CBT and how it can give him the tools to step from darkness into light.  I told him that in just a short time, he could be free from OCD’s reign, and I realized …

I am an advocate for those in slavery seeking freedom.

I may not be rushing into workhouses to confront slave-owners or holding children in the midst of a chaotic rescue, but I am a CBT advocate, telling obsessive-compulsives over and over and over again that this is the way to freedom.

I still plan to support IJM financially (and you can too at http://www.ijm.org/give), but I realized that my personal rescue missions will look a little different.

eternal life

Price: “Eternal life is not a substance, it is a Person, and it is enjoyed by knowing the Person.  It is knowing God and knowing Christ.”

I remember reading this in college and having something click inside of me.  It’s not about Heaven.  It’s about JESUS.  Which is why my favorite verse is now John 17:3, which says, “And this is eternal life, that they know you the only true God, and Jesus Christ whom you have sent.”

It reminds me that my eternal life has already begun, since I know Jesus now and will continue to know him forever.

For someone who has religious-themed OCD and scrupulosity, this is like a rock beneath my feet.

scrupulosity and the unforgivable sin

Scrupulosity: OCD centered around religious themes.

The story of my life.

The obsession: for many years, my head would repeat blasphemous things over and over, sometimes triggered by certain sounds and sometimes by non-specific phrases about hell, demons, souls, the devil.

The compulsion: I began to repeat one particular phrase– “Father God, I love You”– over and over in my head as a way to stem the other thoughts.

It became very difficult to handle everything that was going on: these blasphemous thoughts would crowd me– I mean, really crowd me (the image I have is of these thoughts bumping and grinding on me like dirty brutes at a dance club), and I’d be warding them off by repeating this repetitive prayer over and over (and over and over and over).  And on the outside, it didn’t look like anything.

Those who were closest to me (dear friends and roommates and family members) knew that I was going through hell, but they couldn’t see the battle that was taking place.  They only knew of it when I told them (or on nights when I broke down sobbing in fear of eternal damnation … thanks for speaking truth to me those nights, Desiree!).

It is hard to describe exactly what it feels like to feel as though you’re wearing a sentence of hell on your shoulders.  Here’s a shot:

Condemnation (or supposed condemnation) is like being in a tank of water with only inches of air at the top.  You have to lean your head back to put your lips to the air, and the whole while you must keep treading water.  There is no opportunity for distraction.  It consumes every moment of your life.

Anyone reading this understand me?

If so, please read this sermon.  I think it might help.  My heart aches for you, but there is hope.  Lovers of Jesus Christ don’tbelong in hell.  Let’s talk.

OCD logic

It exists!  It’s thorough!  It’s also ridiculous.

Here’s an example:

1. Begin with an assumption: most parents tell their children not to talk to strangers.
2. Therefore, if a young person talks to me, they are being disobedient.
3. If I am causing a child to be disobedient, then I too am sinning.
4. Extrapolation: a parent’s direction does not just wear out; therefore, even teenagers and young adults AND EVEN ADULTS are still under that command not to talk to strangers unless the parent has told them otherwise.
5. Most parents wouldn’t think to say otherwise.
6. Therefore, it is sinful for people I don’t know to talk to me and sinful for me to talk to people I don’t know.

Did you make all those connections with me?  But you think it’s silly, right?

Yeah, an obsessive-compulsive can’t dismiss things so easily.

Good luck, Polly Pure-O, at your job tomorrow, at the drive-thru, at the Target register.  Say a word and you’ll only feel guilty.

To the OCs who read my blog, walk me through your OCD logic in a comment!